Friday, June 16, 2017

Cleveland Clinic

"Today as I head off to Cleveland I feel happy. I feel happy, and I feel grateful."

I wrote this as we were taking off, so you can see what kind of mindset I was in. After the last few weeks of things finally coming together, this felt right, and I was so grateful for my parents for doing this for me and being by my side. That's what I remember feeling.

The first day was an exhausting travel day. We had to connect through Toronto to get to Cleveland. So we took the very short flight from Montreal to Toronto (about 50 minutes), and then went through US customs there and took the very short flight (about 35 minutes) from Toronto to Cleveland. Sounds short and easy, but these tiny little flights actually take all day to get through. I was pretty much devastated when I found out the air conditioning on our flight to Cleveland was broken, on a 33 degree day. But with ice, I got through it!

We were staying in a really cool looking area downtown, and I was pretty impressed by Cleveland from the start! We grabbed a bite at House of Blues and went into a couple of tourist-y stores before crashing back at the hotel.

We woke up bright and early (around 5:30 AM) on Wednesday morning to head to Cleveland Clinic. Our first appointment was at Global Patient Services. I got to meet the kind coordinator who scheduled all my appointments throughout the last couple of months, and we had a meeting with a financial advisor.

From there we were escorted to a different building where I'd be meeting with the neuroimmunologist. Our appointment was at 9:00... and we were called into our appointment at 9:00. This may not seem like a big deal to some, but in Canada, it's an anomaly to be taken into your appointment on time. We are grateful when we have to wait 30 minutes. My doctor's office at home who is worst with this is my urologist (who I absolutely love and is totally worth the wait). The longest we've waited is 3 and a half hours. So it was quite a breath of fresh air to be taken right when we were scheduled for.

The neuroimmunologist was very kind, and a couple of things came out of the appointment. Firstly, he definitively diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). Secondly, in regards to my neurologist at home suspecting Stiff Person Syndrome, he is suggesting a trial of IVIG. Hopefully this is something that will be life changing for me.

We were finished there quite early, so we had the rest of the day ahead of us and did a little bit of good old US shopping (I love you Target and Five Below) before heading back to the hotel to relax.

We woke up bright and early, but significantly less bright and early than the day before, for my Gastroenterology appointment on Thursday. For him, we ended up waiting half an hour, but like I said, that's nothing for us! Even though this appointment wasn't the most eventful, I loved the doctor. He was great at explaining things, and super funny and down to earth. He basically explained to us what kind of tests we'd need to do to find out if it's only my colon involved in the dysmotility, or if it's also my small intestine. So hopefully that is something we can figure out in the future. He was recommending starting the same medication as my gastroenterologist at home recommended to get things moving better. He also recommended a trigger point injection for an area where I have myofascial pain on my abdominal wall.

When we finished this day, we continued on our US shopping adventure... probably a little too hard, but that's okay. I crashed hard, but survived!

On Friday we slept in, and headed to the airport for our flights home. After what felt like the longest travel day, I'm home with Big in my own bed.

All in all, despite the reason for our little trip, it was awesome getting to visit a new city. Life at home gets a little mundane and it really did feel like a little adventure.

Monday, June 12, 2017

Stiff Person Syndrome

June 2017 came in like a wrecking ball, and I apologize if you have Miley stuck in your head now like I do.

After years of searching for answers, and coming up with nothing, I've received two diagnoses in the last week, and one possible diagnosis. My internist told me I have Autonomic Neuropathy. Next I met with my Gastroenterologist, who told me I have Intestinal Dysmotility.

Lastly, I met with my Neurologist, who thinks I may have a disease called Stiff Person Syndrome based on my blood results and clinical symptoms, and is going to treat me as such. Since brain fog is a real thing over here right now, I'm going to copy and paste things from different websites and include sources, so you can learn about it if you'd like to.

This would be the answer to my walking/gait issues, which I thought we may never know.

"Stiff Person Syndrome (SPS) is a disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities" Source 
"SPS is extremely rare. Although it is not possible to determine the exact prevalence, it may occur in fewer than 1 per million. The disease is more common in women (the ratio is 2 women for every man effected). There is no predilection for any race or ethnic group. There is an association with diabetes and perhaps over half of patients with SPS have or will develop diabetes. Other autoimmune diseases have been found in association with SPS, for example: thyroid disease and vitiligo." Source 
"Although most often the disease begins insidiously and progresses over years, in some cases symptoms can develop over weeks. The first symptom is usually a persistent progressive stiffening of the back or a limb. A sensation of aching or stiffness may be noted. This progresses with time and is described as stiffness, rigidity, hypertonia or increased tone. Additionally patients experience spasms of the involved muscles which are characterized as severe, tremendous, intense and painful. The examiner may feel there is a volitional component. When stiffness and spasms are present together patients have difficulty ambulating." Source
"The pathophysiology of the disease is autoimmune. The most common pathologic correlate, anti–glutamic acid decarboxylase (GAD) antibodies." Source
"Treatment may involve high-dose diazepam, anti-convulsants, or intravenous immunoglobulin (IVIG)." Source  
"Although SPS is a serious potentially life-threatening disease, and some of the treatments have serious potential side effects; the course of SPS is variable. There are patients who, with proper treatment, are able to return to activities they enjoy." Source

Before I even have time to let this sink in, we're headed to Cleveland Clinic. Who would have thought all of this would come days before my trip? When we get back I'll be starting the first line of treatment for SPS, which is high dose diazepam.  All I know is one thing... despite any sort of prognosis, I am so ready to close this chapter of my life and move onto the next. And here's to seeing what other answers and opinions may lie in Cleveland.

Tuesday, May 23, 2017

Why Chronic Illness Patients Can Relate to Princess Ariel

“I wanna be where the people are
I wanna see, wanna see them dancing”

If you’re unfamiliar with Disney’s ‘The Little Mermaid’, which is likely very few of you (and if you are, you should watch it!),  it’s about a mermaid who dreams of being part of the real world, above the sea. She watches the real world from afar in her underwater kingdom, constantly daydreaming of growing legs, leaving the sea, and experiencing what seems like true life to her.

If you’re living with a debilitating chronic illness, doesn’t this sound a little familiar to you? I don’t know about you, but since becoming ill a life-changing way, I tend to feel like I’m living in some sort of bubble, or rather outside of some sort of bubble while the real world continues around me while I look at it through a glass wall.

I watch my friends grow up and their careers take off. I see pictures of beautiful smiles on their faces while they’re out having adventures with their friends. I’m watching them graduate and begin living out their dreams. I’m watching them experience some of the pure joy, and the priceless memories that are supposed to come with life.

 “Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin’ free – wish I could be 
Part of that world”

 Sound even more familiar now? We dream of being part of their world.  A world without pain, a world where our bodies function the way they should, allowing us to do all the things we dream of doing. Now that’s not to say there’s anything wrong with living a life with illness. We can thrive exceptionally. But until you find your perfect place in the community, it can really feel like you’re a ghost watching everyone do the great things in life that you’re waiting for your chance to do. Also knowing those exact things may never be possible.

“When’s it my turn?
Wouldn’t I love, love to explore that shore up above?
Out of the sea
Wish I could be
Part of that world….”

But just because those exact same things that they do may not be possible for us, we have our own set of opportunities. We do things people expect us not to be able to do every day. We get to live under the sea, and above the sea, and see things from vantage points that most people never get to see. We appreciate the good that much more. We know that life is short. We watch our friends do the seemingly impossible. We gain compassion, understanding, and gratitude for the little things in life. We see a whole different side of the ocean.

Tuesday, March 21, 2017

When The Oath To Do No Harm Is Broken

It's a Tuesday morning. I wake up, and once I come out of the fog, I remember today's the day; I have an appointment with a new cardiologist.

For many people this would be a pretty mundane thing. Yet all of the sudden I am filled with worry, and sheer anxiety. Seeing a new doctor often makes me nervous for weeks before. Same with seeing an old doctor, with the exception of the few I trust.

Why am I fearful? Doctors took an oath. An oath to do no harm. And I often feel traumatized by my past experiences with them. I have been let down so many times before, in so many ways.

My very first bad experience came right when my symptoms began. I went to my GP at the time, who told me I was just out of shape and that my depression wasn't well controlled, despite me telling her that something else was definitely wrong. This became a pattern, repeating itself so many times until I thought I was probably just imagining things.

People would tell me, "Doctors are just people", and that I shouldn't be so nervous. "They're not Gods!", they would say. But to me, they were. They were the ones who held my life in their hands. My future. They were the ones with the power to change my life, by either fighting and advocating for me, or by shrugging their shoulders at my problem and leaving me on my own. The latter is what happened most of the time.

So I lost faith in doctors, but I would keep going to them. I wanted not only to function and be able to live life again, but to not be in pain every day. Each appointment, I would put up my shield and prepare myself for the blow. Even with a little chance of hope in the back of my mind, I would prepare myself for a painful visit. I did not expect them to help me. I did not expect to come closer to answers. I did not expect them to keep their oath of doing no harm. Because at times, their words replayed in my head for days. At times, I had nightmares about them. At times, they made me want to give up, because of how easily they gave up on me.

So to all you future doctors in med school, please remember that you will be holding someone's life and future in your hands. You will be holding someone's ability to go to school and go to work in your hands. You will be holding someone's freedom in your hands. We're breakable. Please be careful not to drop us.

Thursday, March 16, 2017

Life Lately

Hi all.

This past week has been full of big decisions and there will be many big decisions to come in the following weeks. With the advice and support of my most trusted doctor (my endocrinologist), we have decided that it's time to travel to the US for medical support.

I have felt many times that our medical system has failed me, but hearing my own doctor telling me that feels like a whole other story.  She believes that maybe I'm dealing with something genetic, possibly some sort of mitochondrial form of diabetes. And so she is helping us decide exactly where to go in the United States.

I've expressed this before; Having so many problems in so many different systems of your body gets extremely frustrating when you don't know what's causing it. My doctor told me that even though there may not be any treatment options for whatever I have, I should know what it is. And that meant the world to me.

So despite this system failing me, and us making the big decision to leave the country for help, we're not alone. I have a very small team, but it's a pretty great team. I will try my best to keep my blog updated on this new chapter.

Monday, March 13, 2017

Things I Learned While Inpatient

DKA can happen in a split second. I learned that the hard way this month. On February 28th I was admitted to the hospital in DKA, with a goal of getting me out of DKA, and figuring out the cause for the horrendous headaches and nausea that I've been dealing with for the last month. The stay turned out to be 11 days long, and although we didn't get very far in regards to answers, I did learn some other things...

1. Patience. 

If patience is a virtue anywhere, it's in the hospital. Things happen at a snail's pace. And there really isn't a thing you can do about it. So patience is forced on you. I happen to be the one of least patient people, so this isn't necessarily a bad thing, because I can always learn some patience.

2. Worrying doesn’t change or solve anything.

While you're stuck doing all this waiting, you're generally also doing all this worrying. "Will this consult go through?" "Will this doctor help me?" "Will this test be scheduled while I'm inpatient or outpatient?".... I can go on and on. But the truth is, is that you don't have all the power while you're in the hospital. There are rules, protocols, and logistics in place, and they are what they are. Worrying about them won't change them. What's going to happen will happen, and you have to try not to torture yourself while you're waiting for it! Note to self.

3. Nurses are the best.

 During this stay, I had the most special nurse. She took the time to come into my room, sit in a chair, and genuinely ask how I'm doing. We had a long talk, and by the end she decided she wanted to advocate for me. She did what she could to get me the help I needed while I was in there, without me even asking. And that meant the world to me. It meant the world to me the next day when I was sobbing after a bad consultation, and she came in and said "Talk to your Aunt Maggie", and comforted me and encouraged me. As you can see from one of my last posts, I have a huge appreciation for nurses. This was one of the most incredible nurses I've ever met.


  4. Good veins are hard to find. 

As a pale, young woman, I should have good veins. I should have great veins. However, I just don't. They are thin, they slip and slide when you try to get them, and they have no blood return. Nurses hate taking blood from me, and they especially hate inserting IVs. My first IV was hard enough to get in that they had to bring a guy in with a special ultrasound-like machine to find my veins. It was super cool and worked like a charm. However, while I was there, my doctors wanted at least 2 blood tests a day. The nurses were not very happy about this, because for some of them, I'm an impossible stick. They would ask the doctors repeatedly "Are you sure we really need 2 blood tests a day?", because it seemed that this was torturous to them. Needless to say, my arms are black and blue everywhere.

5. Canned peaches are really good.

Not much else to say here. The rest of the food is nothing to write home about.

6. These are the times when you find out who really loves you. 

 Being in the hospital sucks. It's scary, it's frustrating, and it's boring. Your friends and family who check in on you are your world. 

Sunday, February 19, 2017

A Love Letter To Nurses

Dear Nurses,

Sometimes we wonder if you know how amazing you are. You work incredibly long hours. Not only do you put up with patients who are rude to you, you still put in the effort to take care of them because that's what you love to do.

You are the heart of the hospital. You are our advocates when something is happening that shouldn't be. You go above and beyond to keep us at ease. You barely have time to eat your own lunch, but make sure that we got ours. Your feet are hurting and you’re tired, yet the most important thing to you is to make sure we’re the most comfortable we can be despite the circumstances. You are not only our caretakers, you are our friend. In a cold, scary hospital room, you are the warmth and the light.

You are kind to the elderly who won't stay in their bed even though you keep telling them not to get up. You are kind to the kids who won't stop crying. You are even kind to the patient who soils you in their bodily fluids. Patients may yell at you, treat you like a maid at a hotel, and expect you to know the answers to everything, but you still keep a brave face. You are some of the most fearless people we’ve met. 

You work such a long shift, sometimes even a double, and we look at you and wonder how you're still on your feet. You might be working all night and come 6 AM, you still come wake us up with a smile. You likely see heartbreak on a daily basis, yet you stay strong for us. You are a huge part of the reason we have the courage to keep fighting whatever we are fighting. Without you, we'd be lost.

It takes the most special type of person to be a nurse. Thank you for being there for us during some of our hardest times. They are a little bit easier to get through because of you.